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Day 104

Updated: Jun 26, 2019

With a childhood apraxia of speech diagnosis tentatively given to her, I was hyper-focused on getting Constance to speak. I took her to her speech and occupational therapy. She and I worked on the labeled ASL flash cards and photo labels I made. While eating or when she needed a break, I would put on Signing Time ASL videos.


Around my work and Constance’s care schedule, I ravenously consumed books and podcasts on speech delays and apraxia.


I would have dreams about when she was an adult and we’d think back on this challenging phase fondly. I’ve found that blind optimism makes reality more palatable. However, in reality, I know that many kids who people initially think have apraxia at age two go on to get autism diagnoses at age three.


I feared any diagnosis that would little Constance’s potential in any way. I saw her becoming president some day and having to explain away being a late talker. These delusions were only encouraged by the innumerable friends and Google searches that assured me that Albert Einstein didn’t speak until he was 4. She was two, nonverbal, and I was distracting myself from my violent fear with distractions like what would make her less or more electable as president.


It was a race against time and I was a manic, hysterical, speeding runner.


Children can be diagnosed as having autism spectrum disorder (ASD) by a developmental pediatrician. When Constance went to her developmental assessment, they included a speech pathologist and occupational therapists. For some forms of ASD, there are genetic tests available that are simple and fast.


The doctor and therapists prepared a report on the assessment. I was supposed to come in and hear the results face to face with Constance a couple of weeks later. I don’t recall what excuse I made to get them to email me the report and tell me the news on the phone. The entire truth was I was scared that it would be bad news and I didn’t want to cry in front of Constance. She had receptive language skills. I didn’t want her to learn she had a diagnosis and then to see me cry. I never cried in front of her so it would have really freaked her out. I wanted her to know that she’d be okay and I was proud of her no matter what. She was a blessing and I was grateful to be her mom.


They emailed me the report at the time of the call. The doctor began by explaining that she doesn’t typically tell people upsetting news by phone. Then she said Constance has autism spectrum disorder. Predictably, I cried.


I asked about the apraxia. She said that I should come to terms with the fact that Constance would never have typical expressive language and is unlikely to ever verbally speak. She said this was consistent with the challenges of severe autism spectrum disorder. I cried some more.


When we got off the phone, I carefully reviewed the report she sent looking for any factual errors that might lead the doctor to change her diagnosis and say that actually, my daughter was fine. This level of blind ignorance about healthcare is typically reserved for children and those gracing Darwin’s list.


The report listed words I’d heard Constance say, they’d included “hi,” “mom,” “dad,” “eat,” and “go.” I rushed off an email where I explained that she’d also said “up,” on two separate occasions. The doctor assured me that did not in any way impact the diagnosis.


The report included a resource page for things like setting up a special needs trust to take care of your future disabled adult after your death. I did not find it encouraging.


I still saw Constance’s potential as limitless. I was sad that she was going to have to tackle the challenges of autism but I was going to be right there swinging with her. Her road had unexpected, unfair mountains to climb but she’d get there. She’d grow up, have a fulfilling career, fall in love, have children, and enjoy a retirement full of grandchildren and travel. I refused to accept anything less for her.

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Unknown member
30. Juni 2018

You are too good a mom not to be one again.

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Unknown member
27. Juni 2018

Day 105 is at https://www.wantmybabyback.com/blog/day-105.

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